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Listening is doctor’s key to dignified end-of-life care

Paul Kleyman | 4/10/2013, 7:10 a.m.

So, for example, the average hospice stay in the United States is now only 19 days. But palliative medicine begun much earlier reduces the agony and stress of disease so well that many patients actually survive longer. And family caregivers, relieved of constant stress, have been shown to live longer following a loved one’s death.

“Palliative care should be woven seamlessly into treatment,” noted Periyakoil, who is also associate director of Palliative Care Services at the VA Palo Alto Health Care System. “Patients shouldn’t have to know the word ‘palliative care.’ It should be something that is given to you when and where you need it because it is the standard practice.”

Periyakoil also discovered that patients who come from cultures that discourage — even prohibit — open acknowledgement of death and dying typically wind up having their referrals to hospice treatment delayed until it’s too late for them to benefit from broader palliative care.

At cultural boundaries of death

She learned that cultural boundaries around death could be violated in other ways. She recalls a home visit she made to see a young Chinese woman with late-stage cancer. “The husband opened the door silently, did not respond to my greeting and went into his wife’s bedroom. She must have died moments earlier. When I squatted down next to her body to check her pulse and prepare an official death pronouncement, her husband gently shook his head.”

Sensing she was intruding in a sacred moment, Periyakoil withdrew. At the door she wanted to offer her condolences but the husband once again shook his head and her words froze in her mouth.

“Later I learned that Chinese Buddhists believe the soul lingers in the body for some time after death” she said. “So they do not touch the body nor vocally express grief, as this might disrupt the passage of the dying person’s soul and prevent them from being reborn into a better life.”

To help doctors become culturally fluent, Periyakoil is producing a free, online text series addressing the sensitivities of 13 distinct ethnic groups, among them African Americans, American Indians, South Asians and East Asians.

She also is developing videos for an online series on the need for doctors and the public to share decision-making, titled “Can We Talk: Conversations with multi-cultural Americans about end-of-life care.” In the segments, professional actors depict scenes from common patient situations drawn from doctors’ real-life experiences.

At Stanford’s Palliative Care Education and Training Program, Periyakoil’s fellows embrace her holistic approach. “Palliative care is one of the few fields of medicine where you deal with the whole person,” says Thui Pham, an internist. “There are so many factors that impact life, not just the medical issues.”

“Palliative care is not about the end of life,” Periyakoil concurs. “It’s about how a patient can get the most out of every day.”

New America Media